Tag Archives: pain advocate

In case you don’t already know, September is Pain Awareness Month. Join me for the next 30 days and show your support. Wear or do something PURPLE. Be a voice. Get involved. Make a difference.

Through the month of September many across the nation are joining in to help raise awareness for the need of effective pain treatment and pain management for millions of Americans around the world who suffer with pain.

As a behind the scene pain advocate and one who is truly passionate about the cause, I try my best to do what I can when I can to make a difference. Before I was diagnosed with Fibromyalgia and a host of other conditions that cause me to suffer daily with chronic pain, I could not imagine what it would be like to be in pain indefinitely. Or knew of anyone who experienced what I find myself experiencing every day for over the past 14 years. Even so, I cannot imagine one individual that does not know someone who suffers with pain.

What I have learned throughout this pain journey, it does not discriminate. It can affect anyone at any given time without any warning. You never know when it can happen to you. And sadly, I find it is not until someone experiences pain at a level beyond comprehension that will last past infinity, they may never understand the significance of the need for effective treatment and care. It is my hope one day, new treatment and new research develops that will help other American pain sufferers find some form of normalcy and have a better quality of life as a result of their findings.

There are a number of ways you can get involved. It can be something as simple as calling a friend or love one you know who suffers with pain and letting them know they can count on you for support just by checking on them from time to time. Love and compassion can go a long way. Let them know you love them and are there for them.

Lastly, find an organization that offer information and resources to consider during the month of September. You can visit various pain organization websites like U.S. Pain Foundation, National Fibromyalgia & Chronic Pain Association (NFMCPA), or Power of Pain to get involved with planned events and activities. And by all means don’t just get involved during the month of September but show your support throughout the year. You don’t know how much your support, no matter how big or small, can change a life.

As for me, I may have Fibromyalgia and suffer in silence with chronic pain every day but you wouldn’t know it when you see me. When you say, “But you don’t look sick” you’re right I don’t. But I am sick. I don’t need to look like it for you to know.

I am a chronic pain warrior. I’m a victor and not a victim. I’m taking back my voice to raise awareness. I have a condition but my condition doesn’t have me. I may have been diagnosed with a disease but this disease does not define me. I may suffer with symptoms of fatigue, chronic pain, insomnia, muscle spasms, loss of concentration, and memory loss to name a few. Make a declaration today,

I am Joy and I want the world to know,
what I would do if this were so.

If I lived in a world with less pain, this is what you would see.
A world filled with less struggles and strain, aching to be free.

I would be a voice that does not go unheard.
But instead be one of distinction to serve,
a community of people with better places to go
in their provision of care that exceeds “the pain world” we’ve come to know.

Pain as it is, with treatment that works.
Not pushed or stereotyped merely because we “irk”,
the professional that thinks we all are the same,
prescribing a drug that has the same name,
even if our conditions are in different range.

If I were this person this is how it would be,
you could hear my voice but you can’t see me.
Because if I was in less pain I would be free.

Free to live with less struggles and despair,
but with a greater hope to overcome obstacles I can bear.

Free to speak without feeling ashamed
of the world I now exist in with the devastation of pain.

Free to choose a doctor that will openly listen to me
and not place me in the same category.

Free to live out the goals I so desire,
without constantly feeling sick, weak, or tired.

Free to be the person I was created to be,
to live out the purpose that was pre-destined for me.

With more strength than I now have that would carry me through,
a life filled with courage and hope anew.

If I lived in a world with less pain “I” would be,
the person behind the door you cannot see.
The person longing, waiting…to be free.

Free to be Joy. Free to be me!

by Joy Darden

To raise awareness about the need for effective pain care in response to the former American Pain Foundation’s (APF) If I Lived in a World with Less Pain, I Could…. campaign to SECURE A FIRST-EVER PRESIDENTIAL PROCLAMATION OFFICIALLY NAMING EVERY SEPTEMBER NATIONAL PAIN AWARENESS MONTH, my family helped create this video “If I Lived in a World with Less Pain, I Could…” to share my voice as well as spread the word to bring awareness to what I believe is such an important issue in the lives of those who live with pain.

The video represents my message to PRESIDENT OBAMA what MY WORLD WITH LESS PAIN would be like and what I Would Do If I Could…if I were not in pain. It gives me an opportunity to make a difference in the lives of others as I work to bring national awareness to the “hidden” epidemic of pain (APF) so that those who suffer with pain will have a right to effective care and treatment; because “pain” is not just an individual or local problem. It is a national healthcare crisis. It does not only affect pain sufferers but it affects families, friends, associates and anyone who is connected to its world. Even though it may not directly affect every individual, the physical, financial and emotional affects can be devastating to the pain sufferer and the families of those who will ultimately suffer. But with your help, we all can make a difference.

Please join me in support of this cause and spread the word DURING THE MONTH OF SEPTEMBER or UNTIL A PRESIDENTIAL PROCLAMATION IS SECURED by asking others to spread the word on Twitter, Facebook, Google+ Instagram, Periscope, Pinterest, or any other social media outlet. Your support would be greatly appreciated! Thank you.

I have a condition but my condition doesn’t have me. I may have been diagnosed with a disease but this disease does not define me.

I may suffer with symptoms of fatigue, chronic pain, insomnia, muscle spasms, loss of concentration, and memory loss to name a few. But you wouldn’t know it when you see me. When you say, “But you don’t look sick” you’re right I don’t. But I am sick. I don’t need to look like it for you to know.

I dress well. I play the part. I don’t look like what I’ve been through. No one can see on the outside the pain I go through. I may be discouraged at times because of a lack of acceptance, support, and belief from doctors, family, and friends. But I don’t let it stop me. I am destined for greatness. This condition will not make or break me.

For every person who suffers with fibromyalgia and chronic pain, I salute you today. Know that you are not alone. We are in this fight together. Be strong. Don’t let the negativity or disbelief of others define you or make you feel ashamed because you know you are sick. As long as you know how you feel, you don’t need to look like it.

Some may never understand your struggle. They don’t need to. Persevere. You are beautiful. No matter how much pain you’re in, do your best to live your best life. You are more than a conqueror.

Today is Fibromyalgia Awareness Day. Join me. You have a voice. Let’s make the invisible disability visible. Take back your voice. Raise awareness to help others better understand this condition. We’re hoping for a cure. When we all join forces, together, we can make a difference.

I received an email today from the United States Food and Drug Administration (FDA) notifying participants of the full recording that is now available from the meeting held with fibromyalgia patients March 26, 2014. I have provided below the email in its entirety as well as links the FDA provided for anyone who is interested in what was discussed and for those who missed the meeting, as well as for those who may be interested in submitting comments. Please note the period to submit comments will close May 26, 2014.

As a fibromyalgia patient and advocate for change, I encourage everyone to please take a moment to review the meeting details as well as submit your comments and let your voices may be heard so that you too can make a difference. Your comments and efforts will be greatly appreciated!

Thank you! -JD

A Message from United States Food and Drug Administration

Dear fibromyalgia meeting attendees,

Thank you for attending the public meeting on fibromyalgia patient-focused drug development! FDA collected valuable information on fibromyalgia, the impact it has on patients’ lives, and patients’ perspectives on treatment options. We truly appreciate the courage, effort and time invested from everyone who was able to attend the meeting in person or on the web.

In addition to the input we gathered at the March 26 meeting, we encourage fibromyalgia patients, caregivers, and other stakeholders to submit written comments to the online public docket. The comment period closes on May 26, 2014. Submit your comments through this website: http://www.regulations.gov/#!documentDetail;D=FDA-2013-N-1041-0004.

Again, thank you to everyone who attended the March 26 meeting. If you have any questions, please email PatientFocused@fda.hhs.gov.

Discussion Questions

Topic 1: Disease symptoms and daily impacts that matter most to patients

1) Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep disorders, etc.)

2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)

a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?

3) How have your condition and its symptoms changed over time?

a) Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?

4) What worries you most about your condition?

Topic 2: Patients’ perspectives on current approaches to treating fibromyalgia

1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise.)

a) What specific symptoms do your treatments address?

b) How has your treatment regimen changed over time, and why?

2) How well does your current treatment regimen treat the most significant symptoms of your disease?

a) How well do these treatments improve your ability to do specific activities that are important to you in your daily life?

b) How well have these treatments worked for you as your condition has changed over time?

3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)

4) What specific things would you look for in an ideal treatment for your condition?

In support of a cause I am truly passionate about for those who suffer with ongoing chronic pain, as a pain advocate, I decided to dedicate this post today to lend my voice in honor of September Pain Awareness Month.

Having lived with chronic pain for the past eleven years and being diagnosed with various conditions, I became an advocate with various chronic pain association organizations to help raise awareness. Although my efforts are limited due to limitations and challenges I face, I do what I can when I can to make a difference.

To raise awareness about the need for effective pain care in response to the American Pain Foundation’s (APF) “If I Lived in a World with Less Pain, I Could…” campaign to SECURE A FIRST-EVER PRESIDENTIAL PROCLAMATION OFFICIALLY NAMING EVERY SEPTEMBER NATIONAL PAIN AWARENESS MONTH, my family helped create this video “If I Lived in a World with Less Pain, I Could…” to share my voice as well as spread the word to bring awareness to what I believe is such an important issue in the lives of those who live with pain.

The video represents a poem of my message to PRESIDENT OBAMA of what MY WORLD WITH LESS PAIN would be like. It gives me an opportunity to make a difference in the lives of others as I work to bring national awareness to the “hidden” epidemic of pain (APF) so that those who suffer with pain will have a right to effective care and treatment; because “pain” is not just an individual or local problem. It is a national healthcare crisis. It does not only affect pain sufferers but it affects families, friends, associates and anyone who is connected to its world. Even though it may not directly affect every individual, the physical, financial and emotional affects can be devastating to the pain sufferer and the families of those who will ultimately suffer. But with your help, we all can make a difference.

APF ceased operation last year and is no longer active, but I am still campaigning and fighting for a presidential proclamation.

Please join me in support of this cause and spread the word DURING THE MONTH OF SEPTEMBER or UNTIL A PRESIDENTIAL PROCLAMATION IS SECURED by asking others to spread the word on Twitter, Facebook, Tumblr, or any other social media. Your support would be greatly appreciated! -JD

Don't ever change yourself to impress someone, cause they should be impressed that you don't change to please others -- When you are going through something hard and wonder where God is, always remember that the teacher is always quiet during a test --- Unknown